Today, the Parkinson’s Foundation will host an event in Denver that will bring researchers and clinicians together with the cannabis industry to discuss pathways to study the therapeutic potential of cannabis for symptoms of Parkinson’s disease.

Alyson Martin, Cannabis Wire co-founder and editor, spoke with the foundation’s chief scientific officer, James Beck, about the foundation’s plans, as well as the survey, which the foundation did in partnership with Northwestern University, that inspired the event. The survey of attitudes about cannabis among physicians at 40 medical centers found that 80% of them had patients that had used cannabis, and, significantly, while 95% of neurologists had been asked about it, fewer than 1 in 4 had any cannabis-specific training or education.

This interview has been edited for length and clarity.

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Alyson Martin, Cannabis Wire editor: Tell me a bit more about the survey that was conducted—the methodology, the results, and what prompted it.

James Beck: The survey was something we did a couple of years ago and that was really prompted by a lot of the feedback from the clinicians. We conducted the survey in order to get a better understanding of: what are the levels of knowledge and understanding of clinicians regarding the issue of marijuana within this space. … It helped us recognize that this is a real issue within the Parkinson’s Disease community for clinicians as well as patients, and that there’s lots of information lacking. Every single clinician we spoke to said, ‘This is the most asked question I have, is about medical marijuana,’ and we don’t have a clear answer to give to our community.

So that prompted us to start assembling the team of experts who are going to be at a meeting in Denver to really understand: What do we know about medical marijuana? How could it be useful for Parkinson’s disease? What’s the data out there already, and where do we need to go next in order to really be able to understand how to use it effectively? What research needs to be done? Because there has not been a lot of research in this realm. And then, How would that research proceed? How do you design a clinical trial in an appropriate way?

Too often, people do research reports and studies but they are not sufficiently well designed to give you an adequate answer. So it can just lead to more confusion. What we want to do is outline what would be necessary in order to address these questions in a rigorous fashion.

Martin: So, what are some of the anecdotal responses that Parkinson’s patients have reported to their doctors or their medical professionals about their medical cannabis use?

Beck: A lot of it centers around use. What could medical marijuana be used for? Some of them are asking permission. ‘Would you advise, would you recommend this?’ Many clinicians are reticent to recommend because of the lack of information, they don’t want to cause problems for people with Parkinson’s. And I talk about how it’s not a clear road ahead for people with PD.

But what has been reported as potentially useful for people is that there are some issues that people with Parkinson’s face and those are: anxiety, you know people with PD can be very anxious about things; they can have problems with weight loss, as PD progresses, maintaining weight can be difficult and so something with which to improve appetite could be really helpful; sleep is an issue for people with Parkinson’s disease, so something that might be able to facilitate sleep would be quite helpful; pain is a problem, and sometimes it’s localized to a specific joints but sometimes it can be a broad overall pain, and so looking for non-opioid approaches to deal with pain, either localized or general.

People with Parkinson’s have been discussing ways to help treat their non-motor symptoms. PD is defined largely by problems with movement—they can have stiffness, rigidity, or slowness of movement. Sometimes they can have balance or problems in walking as part of their Parkinson’s disease. It’s important to recognize what a person with PD is experiencing and what they’re trying to solve for. And so the idea of medical marijuana has some appeal to our population because it is something that they can control themselves.

A diagnosis is a diagnosis. That’s often a bolt out of the blue. Say your tennis or golf game goes bad and you go to the doctor and talk to them and they may give you this diagnosis and it’s a really unsettling blow. And as the disease progresses, there’s something called pill burden, which is where they just begin to take more and more medication to help control the symptoms of the disease, because currently there is no way to stop Parkinson’s disease at all. The only medications we have available control the symptoms. And so finding some other way with which to help control symptoms, and to kind of regain control of their lives, is I think one reason why people have this appeal to medical marijuana.

And one of the problems that we face—and I think the medical marijuana community may face this overall—is that too often people equate access with efficacy. a Just because it’s available doesn’t mean it will actually help. Medical marijuana could actually make the situation worse.

For instance, one of the leading causes of fatalities amongst people with Parkinson’s is falls. We’re dealing with an elderly population, the typical age of onset is in the 60s, so they’re at high risk for falls. Marijuana can often lead to a drop in blood pressure, which could lead to a fall, and that could be a problem. Also, people with Parkinson’s can have problems with cognitive function and medical marijuana can create a foggy mind. And so that’s something we need to be concerned about. People with Parkinson’s can experience psychosis as a part of their disease, and medical marijuana maybe can induce that. And so what we’re really talking about here is a way to find what it could be useful for, what formulations might be appropriate, and how do we go about testing it in a population where we don’t do any more harm?

Martin: Is there any way you can summarize the existing research on cannabis or specific cannabinoids and Parkinson’s? Has there been any kind of research review?

Beck: The short answer is there’s not a lot that is definitive. A little longer answer is there have been some studies looking at derivations of marijuana. Sativex is one particular example, which is a nasal spray with a one-to-one ratio of THC and cannabidiol, CBD. And so the idea was to see whether it could help with the motor symptoms of Parkinson’s disease, and it doesn’t seem to be very helpful to that. Based upon what we know—again there’s been limited information—small studies suggest it could be useful potentially for pain, maybe for anxiety, and helping people regain an appetite so they can gain weight. There’s really not a lot out there and too many unknowns.

Martin: What areas of research are needed when it comes to cannabis and Parkinson’s? Is there any sort of understanding ahead, like we specifically need to know dosage, or we specifically need to know if it interacts with one of the main medications that’s used for symptom management? Off the top of your head, what areas might be focused on first?

Beck: There’s probably two parallel pathways and they may be related depending upon how you design the actual study. But one of them is, to your point, dose formulation. What are the active ingredients that we’re concerned about? CBD and THC are the two key active ingredients within medical marijuana. Plenty of other chemicals are there, but those are the two main ones. And what might be the appropriate use for these within the population? And then, second, is trying to understand what symptoms might actually benefit the most from medical cannabis. I listed three or four symptoms that we’ll probably touch on some more. And we’re really trying to figure out where is the low hanging fruit, so to speak.

We are trying to design an intervention that could make a difference for people with Parkinson’s disease, that’s really what this is about. You provide that kind of guidance, not only to people with PD but also to the clinician so that they have some understanding, some foundation for what the guidelines should be.

Clinical research is a slow process, but one of our goals is to be able to provide some basic guidelines people could utilize to understand what might be the benefits, what might be the drawbacks, about the different combinations as they go forth and do this. Medical marijuana is available to many people in many different states and in many different jurisdictions. Our community is not just based in the United States, but it’s worldwide, and so I hopefully we’ll be able to provide some information that everyone can utilize.

Martin: I know there’s a global conversation around medical cannabis right now, that there’s a lot coming out of Israel, Canada. Other countries like Australia are starting to do research. Could you talk a little bit about where the cutting edge research into cannabis and Parkinson’s is, if you can call it that, since it’s still early days?

Beck: I would not say that the U.S. is at the cutting edge simply because it’s still illegal on the federal level. And so that creates a lot of roadblocks to clinical trials, and issues with regulatory hurdles. It’s not that you can’t do them; it’s just not easily done.

North of the border, it’s an entirely different ballgame. One of our co-chairs for our meeting is actually from the University of British Columbia. So he’s going to be able to bring some of that personal experience and knowledge of what’s going on in the space. We recognized that research occurs on a global level and can inform a global population, and that’s why as a foundation we support research internationally. It’s recognizing that in certain places it’s easier to get the answers or at least to try to solve the question. We plan to create an RFA (request for applications) to begin to provide seed funding for research.

Having clarity at a federal level would be really helpful. And people would have the confidence that they can do what they feel is best for their own disease. But even if we’re able to demonstrate that it’s useful for people with Parkinson’s disease, they’re still going to need to take the medications they were prescribed by their physicians in order to help manage the disease. This would be, as they say, adjunct, not replacement, therapy. We don’t have a silver bullet yet, but it’s not going to be medical marijuana.

State Senator Diane Savino tells Cannabis Wire that legalization could be stalled for three years, and that “unless something changes within the next 36-48 hours, we will miss the opportunity to make New York the next state to adopt an adult use program.”